Welcome! This blog reflects more or less my description of living with Usher syndrome, my CI (cochlear implant) journey, my guide dog journey, and any random thoughts I may want to post.

Thursday, March 22, 2007

Saying My Piece

I watched the documentary, “Through Deaf Eyes” last night. I knew it was on PBS at 9:00 p.m. I also knew that PBS was on channel 3 and 10 in our area. My daughter turned to channel 3. It already started. Then at 10:00, it was over. Huh? One hour?

I turn to channel 10. It was just showing the part I just tuned in to an hour before. Oh, man!! Most of the time, when a station has multiple channels, the movies they air are on at the same time!! Aaarrrghh. Will have to wait for a repeat or get the DVD.

I am waiting for a Deafblind documentary. If the “Deaf Can,” so can the Deafblind.

Anyway, my thoughts to the last hour of the show-the part I watched.

I could relate to the mentally retarded diagnosis.

My oldest sister was about three years old. She wasn’t talking as much for her age, not like my older brothers did. So my mom took her to the doctor. He said that she was mentally retarded and may need to be institutionalized. My mom was NOT convinced. My sister knew how to tie her shoes. At the age of three! She was “all eyes” (curious). My mom went from doctor to doctor. Finally, a doctor said that she was hard-of-hearing (HOH) and recommended an audiologist.

My brother, then two, was also checked. He was HOH.

The audiologist fitted them with hearing aids and told my parents NOT to learn sign language. “Make them talk,” he said. “If they learned signs, they won’t want to learn to talk.”

Both of them immediately got some speech/auditory lessons.

My mom was pregnant at the time and my sister was born with a high bilirubin count. (It wasn’t until recently I realized I heard the word wrong-it wasn’t a “blue ribbon” count. I can laugh now.) She was given a blood transfusion and is a normal hearing-sighted person. She was close to having cerebral palsy. (When my mom visited recently, I finally told her that it wasn’t Usher-related. It was a different thing. She was convinced that Usher was in the blood. Just the DNA. If it were so, those with Usher would not be able to donate blood.)

Of course, we were misdiagnosed. The doctors thought that the etiology of our hearing problem resulted from ABO blood incapability. So that is why my mom thought that it would be related to bilirubin. My mom was saying I got jaundice, too, and that they used a different treatment with me, but I still became HOH. It wasn't until my oldest sister had problems with her vision in her twenties that we discovered Usher Syndrome was the cause.

Anyway, then I came along a year later. They were prepared. I wore hearing aids at the age of 18 months. Here is a picture of me when I was about three or four years old. These hearing aids were the kind that had wires leading to a box (processor). My mom made me vests to wear with a pocket so I could keep that box in it. When I was nine years old, I got my first behind-the-ear model. No more pulling out the earmolds when a comb caught on the wire or when I got my hand in there-to move the hair out of my way or something.When I was 18 months old, I was put into what we jokingly called “diaper school.” (You could use that term to mean pre-school or day care, too. That would work.) At that time, I did not talk much. Once I had auditory lessons, my mom jokingly says “You never stopped talking!” It was jibber this or jabber that. Constantly. I bet there were times they wished I didn’t pick up words so fast.

I was enrolled in a public school in the next county where a lot of deaf students were sent. (We all lived a radius of 20-30 miles from that city and were bussed there.) I was segregated in a self-contained classroom with other deaf kids. We did not mainstream with the hearing kids.

We used both speech and signs.

My older sister and brother were transferred to our local parochial school in first and second grades. I was mainstreamed in a few classes in 6th and 7th grades. I remained in the deaf program till 7th grade, then I was transferred to the local parochial school in 8th grade. I was the only HOH student. It was quite an adjustment. It was not the same as being mainstreamed in 6th and 7th grades. I had interpreters. This time I was on my own. I had to use my ears and eyes. I had to pay attention. I was so shy. I couldn’t speak up. The teachers kept me in the front row. This didn’t really matter, since the teachers organized the students to sit in alphabetical order. (My maiden name started with an A.)

Then I went on to a parochial high school. During my freshman year, my brother was a senior. He was HOH, too. So I wasn’t the only HOH student in school that year. My hearing sister was a year ahead of me.

I struggled those last five years. No interpreters. (I can tell you, though, that having the teachers sign like built-in interpreters were a lot easier.) I survived. My hearing was a lot better then. Most of my struggles came from the fact that the material I was taught in the deaf programs were so easy I didn’t have to read it twice. This time it was like jumping two grades ahead and having to study harder. I didn’t like that-not after I had it so easy.

I wrote letters to deaf friends during this time. Some from the old school and some from Lion’s Camp. (At Lion's Camp I met myold peers and made new friends. Most of these kids went Wisconsin School for the Deaf (WSD), a residental school in Delevan.)

I didn’t really hang out with deaf kids again until my senior year in high school. A friend who I met at Lion's Camp and graduated from WSD was going to attend the local tech school. I got back into the Deaf world. My friend told me that Deaf people don’t like it when you don’t use ASL. I didn’t realize there was a difference. I struggle with ASL. It’s a language (though beautiful) that is hard for me to use. I am sure if I practiced at it, it would be easier. I would have to sign things like “I (or me) live in house gray” or “I (or me) drive car blue.” (Don't quote me on it, but that's what I gleaned from it.) It has French origins where the adjectives come last. I did develop a habit of saying “towel paper” instead of paper towel after being with my friend so much.

I did attend the tech college after high school. I figured I went without interpreters for the past five years, I could do without one. I only wanted notetakers.

My friend told me that the other deaf students were upset with me. Because I didn’t want a interpreter.

I dropped out within two months-my heart just wasn’t in it. I was sick of school. I had school up to my ears since I was 18 months old. I wanted to earn spending money. I wanted to work. I wanted to have fun.

I hung out with Deaf friends and attended Deaf Clubs. Some of them got married and moved away. Some got jobs in cities an hour or more away.

I got married to a hearing guy. I lost touch with a lot of them. I kept in contact mostly with one friend and I would drive the 20-30 minute drive to visit her. She also married a hearing guy. We both had oral speaking backgrounds and used Signed English or rather, SEE (Signed Exact English).

I got divorced. I got remarried-to another hearing guy. I was still very much a part of the hearing world, or at least trying to be. If truth be told, I don’t really feel like I fit in either the Deaf or the hearing world, just in-between-especially with my deteriorating vision.

My friend also got divorced.

It wasn’t until my late twenties when I could really notice that I had problems with my vision, but I still managed to hide it from others. It's a lot more noticeable now, though, and I slowly admit to people about it. I can still get by and do most things. Pride-one of the seven deadlest sins.

Because of my eyes, I limited more and more of my driving. No more driving to the next city. I went from driving an hour to visit Deaf Clubs (when I was in my early twenties), other malls, and even other night clubs to only driving locally.

I withdrew. Slowly.

My focus was my kids. My life was my family. And work.

Then the factory downsized after their merger. I knew it was time to move on. I accepted the severance package. I went back to school-the same tech college I attended almost 20 years before.

When I took my first class, I insisted that I went years without interpreters. I didn’t need one. I used the school’s FM system not knowing how much it would help. The drawback to the FM system was that I couldn’t hear what other students were saying during discussions. I could only hear the teacher, because he/she had the microphone. I tried telling the teachers to repeat what the students asked or said. They tried. They forgot easily.

I realized that my hearing was not the same as it was in high school. I had 88% speech recognition at the time. Now it is at 46%.

For the next class, I decided to try using an interpreter. Some signs were different. Some signs I learned were changed. I still understood them. Still, it was a lot easier when the teachers themselves signed. It was hard to divide my attention between the teacher and the interpreter. Talk about trying to do two things at the same time and processing them, too!! (Listening to the teacher and watching the interpreter.) Most of the time, I tried to tune out the teacher so I could concentrate on the interpreter. Sometimes I concentrated so hard on one or the other that I got “lost.”

As far as life goes, I just do what I can. Isn’t that what we all do with what we have?

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About Me

Living with a genetic disorder called Usher Syndrome Type II. It's a gamble-each parent must have the same gene to pass it on to the child. There's a one in four chance of passing it on. One is born with varying degrees of hearing loss and loss of sight caused by a retinal disorder called retinitis pigmentosa (RP).